MRI last night looked a little worse than expected. Not only does Benjamin have fluid in the two main ventricles, he has fluid in every ventricle in his brain (communicating hydrocephalus). The MRI also showed significant white matter loss diffusely (damage in the brain itself), but I have faith that the placement of a shunt will allow the brain room to grow and heal.
Benjamin continues to be happy and smiling occasionally, but definitely seems tired. He is showing some signs of the hydrocephalus mainly tongue fasciculations (tremors), increased strabismus of left eye, and less use of his right arm when compared to the left.
It is hard not to blame myself for not figuring this out earlier, but our Pulmonologist was impressed I was able to identify such small changes at all. Many of the signs of hydrocephalus can be easily masked by Benjamin’s diagnosis.
The current plan is to try to wait til Monday to place the shunt so that all teams are here (pediatric surgery, anesthesia, along with neurosurgery). Just in case something happens overnight or tomorrow morning, Benjamin will be NPO (no food) starting at 2am.
Please keep praying for our Little Buddy.